End-of-life care: Nobody ever wants to talk about it

But doctors and insurers might finally force patients to plan.

Few people are eager to discuss dying. Hospitals, doctors and insurers in New York, however, are increasingly pressing patients to decide in advance whether they want high-tech interventions when death seems near, even if they prolong life only for a short time and at great cost to the health system.

"Somehow we have to change the public dialogue. Why can't you talk about death?" asked Dr. Kenneth Davis, president and chief executive of the Mount Sinai Health System, speaking at The Atlantic magazine's annual health care forum in March.

Doctors, hospital officials and policymakers around the country are proposing new measures to encourage—perhaps even require—people to sign legal documents known as advance directives, which spell out which interventions a patient wants for end-of-life care so that families aren't forced to make assumptions.

The push to complete advance directives is presented as a pro-patient way to spare people the pain of medical interventions that may be futile. But high-tech exits can hurt hospitals and insurers, too. An estimated 25% of Medicare spending nationally is on end-of-life care.

Likewise, the national percentage of chronically ill Medicare patients who died in hospitals was 25%, according to a Dartmouth Atlas of Health Care study on Medicare spending in 2010. But in Manhattan, that 2010 rate was nearly 44%, and among a group of 23 teaching hospitals, the rate at Mount Sinai was the highest.

Dr. Davis would like the federal government to require Medicare beneficiaries to sign the directives as a condition of enrollment. Dr. Davis declined to say whether he believes that is likely to happen.

"I can't tell you how many times this conversation takes place about end-of-life care: One child says one thing, the second child says another, and the wife says something else. No one knows what Dad wants. So you do everything," said Dr. Davis.

No one knows how much of the intense medical care now given at the end of life is unwarranted, or how many patients would have refused that care if they had signed a directive. But widespread concern about cost is driving the push to get the paperwork rolling earlier.

To entice patients to sign advance directives, some New York state proposals call for paying people to sign them, paying higher reimbursements to physicians who get patients to complete them, and setting up insurance plans with lower co-pays for people who fill out the forms.

New York's high rate of in-hospital deaths is particularly frustrating for Mount Sinai, which has a much-praised palliative care program. That approach to dying, with an emphasis on the patient's comfort and home care, is very different from the high-tech interventions typical of an intensive care unit.

"Some studies have described a death in an ICU tethered to machines as a fate worse than death," said Dr. Sean Morrison, director of Mount Sinai's Hertzberg Palliative Care Institute.

Following the feds

Mount Sinai will soon expand palliative care to all hospitals in its 3,000-bed system, and is doing everything it can to publicize the need for advance directives. It recently received a $10 million gift to fund the formation of the Patty and Jay Baker National Palliative Care Center at Mount Sinai, which will support public policy, education, training, national outreach and research on access to such care.

On the national front, a bipartisan U.S. Senate bill sponsored by Tom Coburn, R-Okla., and Chris Coons, D-Del., would pay Medicare enrollees an incentive, likely around $75, for signing the documents.

Insurers have also weighed in. Excellus BlueCross BlueShield in Rochester pays members $25 for completing a health care proxy, one kind of advance directive, as part of its wellness incentive program, said Dr. Patricia Bomba, vice president and medical director, geriatrics. Excellus also pays physicians an enhanced reimbursement rate to engage in shared decision making with seriously ill patients about completing a Medical Orders for Life-Sustaining Treatment form and to develop a care plan to support those medical orders, she said.

Time to sign?

Commercial insurers typically follow Medicare's lead on payments, so a system of financial incentives could become the norm. That troubles some advocates.

"Dying in an ICU is a bad thing, everyone would agree," said Carol Levine, director of the United Hospital Fund's Families and Health Care Project. "On the other hand, foreclosing your options when you don't know what your medical situation would be to save a little money is a bad idea."

Critical care medicine once saved her husband's life, she added, giving him extra years with his family before he died. Advance directive documents "are only as good as the conversation that precedes them," she said, meaning that people should talk frankly with their family members and doctors about what kind of care they would want in various situations.

Dr. Thomas Madejski, an upstate internist and palliative care specialist who is assistant treasurer of the Medical Society of the State of New York, said he wasn't opposed to financial incentives. But he finds the documents most useful for patients who are extremely ill. Even then, if a spouse does not want to let go, it can be difficult to withhold hospital care. Hospitals almost never enforce directives if they are pressured by a family member to continue treatment.

"I had a gentleman who had had a number of strokes, who had dementia, an aortic aneurysm, and still his wife wanted everything done," Dr. Madejski said. "He had a long, lingering death, three years in a nursing home and repeated hospitalizations."

He estimated the cost of the man's care at more than $400,000. "I felt bad for the guy, and I never had a clear sense of where the wife was coming from," he said.

"Fortunately, these cases are rarer than they were," Dr. Madejski added. "But we have a lot to do to educate the general population that we all pass away at some point."

Correction: Excellus BlueCross BlueShield pays members $25 for completing a health care proxy, and pays doctors a higher rate to discuss a Medical Orders for Life-Sustaining Treatment form with seriously ill patients. Those facts were misstated in an earlier version of this article originally published online on June 3, 2014.

A version of this article appears in the June 2, 2014, print issue of Crain's New York Business as "Nobody wants to ever talk about it".

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Brought to you by Crain's New York Business, Health Pulse is a subscription-only website focused on the business of health care. The site is updated every day with breaking news, research and unique information. Subscribe today and receive access to the site and the daily emails. Plus, twice a week we release a special report called Extra, featuring data and statistics.